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Scared of taking the new meds

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Ulcerative Colitis
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Posted 7/9/2009 3:07 PM (GMT -5)
Hi I'm new here,

I started having problems last August, had a sigmoidoscopy last November and finally got diagnosed in February with proctitis, got put on mezavant and ended up hospitalised not long after though as i'd gone from 3-4 toilet trips a day to 12! I was in hospital for 5 days whilst they tried to get it under control, they moved me off mezavant and on to asacol which seemed to have the same effect so they ended up putting me on prednisolone and once things had started to improve sent me home to await a full colonoscopy when it had settled a bit.

Had the full colonoscopy in May and it turns out i actually have pancolitis (which left me very confused as to how they thought it was just proctitis alone in the first place).

They decided to try me on another 5asa (pentasa) to hope i didn't react to this one, lasted 3 days on it before i was back to having 8/9 toilet trips a day so i took myself off it as with 3 young children i really didn't want to be hospitalised again. After discussing at length with my consultant it has been decided that for whatever reason i can't tolerate mesalazine so the next option is to try azathioprin (125mg to start?).

Now after being told i need blood tests weekly for the first 8 weeks to check my white blood cell count doesn't drop so low it could end up killing me if i got an infection that scared me enough but now after reading the leaflet and all the side effects and things i can't take with it i'm actually terrified of starting it!

I do not want to end up feeling worse than i already do with the u/c, i've had them for 2 days now and am still putting off taking them. Are they really as bad as the leaflet says they could be? Does anyone know other options i might have now mesalazine is definately a no?

I asked my gastro nurse what if these don't work and she wouldn't commit to an answer, all i got was well we will discuss that if it happens...

Sorry i've gone on for so long x

Post Edited (flufumps) : 7/9/2009 2:11:49 PM (GMT-6)

Posted 7/9/2009 3:37 PM (GMT -5)
{{{{Hugs}}}} Welcome and sorry you had to find your way here.

As a mother of two kids with UC and having to make the decision to put my children on the types of drugs you are referring to, I totally understand what you are going through!

I will tell you that Aza/6mp have been around for a long time now and are used in patients who have organ transplants at MUCH higher doses than IBD patients take. My now 17 year old and now 10 year old started these meds back when they were 15 and 8 and they have done VERY well on them - both got nearly 2 years of remission with very few "blips" along the way. They have not had any more cold/flu bugs than my child who does not take any meds. They get their bloodwork done regularly and it always turns out within normal.

It was very hard for me to make the decision - I cried buckets thinking "what am I doing to my kids", I am doing what their doctor recommends, because really what are the options - they are NOT ready to have their colons removed.

They have both recently flared - we have adjusted their meds - including upping their aza/6mp and both are headed back to happy and healthy kiddos.

CCFA.org has a link to a webcast from a doctor called "Balancing the Risks and Benefits of Treatment" that might help put your mind at ease. I haven't watched it yet, but have heard from other parents of kiddos on these drugs that I really helps put it all in perspective. http://www.rmei.com/CCFA139VL/

Good luck on what you decide!
Posted 7/9/2009 5:01 PM (GMT -5)
Ugh, those leaflets have to list every single thing that anyone ever experienced while in the drug study, whether it was related to the disease or the drug at all. Please don't be too alarmed by it.
You need to find a treatment that works for you, how will you know what that is if you don't try them? The webcast sounds like a good one, I hope it helps.

As for the diagnosis, I expect proctitis can advance into pancolitis (which just means it has "spread" to your whole colon). So they might have been right about it.

You might reconsider next time whether you really need to go into the hospital or not. I would not for 12x/day, that's really not so bad and you can get that under control with the same drugs taken at home.
Posted 7/9/2009 5:20 PM (GMT -5)
I'm on 125mg and so far I've been fine. I've heard about headaches after being in the sun but I don't get that. I'd go for it if there aren't any other realistic options. It worked/works great for me. Good luck!
Posted 7/9/2009 6:12 PM (GMT -5)
Our stories are similar. I have pancolitis and cannot tolerate mesalamine and have 2 little ones at home. My GI was pushing 6mp. I'm trying natural supplements through a doctor that does Nutrition Response Testing. So far so good. I'm scared to take anything that suppresses the immune system, I would almost rather get my colon out. Guess I'll cross that bridge when I get there.
Posted 7/9/2009 6:19 PM (GMT -5)
Before I got UC I never ever got sick.When I did, it was horrible. Now on immune suppressants, I think I get sick just as often as any normal person. It's prolly differen't for everyone though.
Posted 7/10/2009 4:36 PM (GMT -5)
Thanks for the replies, I guess if i don't take it i will never know, i think just after the 3 we have already tried i'm just assuming nothings going to work and i don't like what the azathioprine could do to me but on the the other hand like some of you have said some people don't get side effects at all.

I still haven't started them, i think i'm going to wait until i've finished my eye drops as the pharmacist said she couldn't be certain they'd be ok with them even though they probably would be i don't want to risk it.

Peety - with the hospital trip, if i could have got away with it believe me i would, i begged them not to keep me in as i ended up missing a concert i'd been looking forward to for ages! But i also have a blood clotting disorder so at the first sign of dehydration i have to go in to prevent another DVT or PE. I had no drugs here i could control it with at the time.
Posted 7/14/2009 12:45 PM (GMT -5)
I've been on azathioprine for 6 months now. I've had a few blips here and there, but that was while I was trying to take fewer Lialda. Each of the blips went away within less than 2 days, and I think I'm getting closer to remission. I can actually eat now and not have to worry about it coming out in 15 minutes. Just try the azathioprine. If it doesn't work, that's just one more drug you can add to the list of 'been there, done that, not going back.'
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